empowering pediatric patients, families, and clinicians through legislative advocacy
TRANSCRIPT
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Empowering Pediatric Patients,
Families, and Clinicians through
Legislative Advocacy
Matthew Wright Advocacy Outreach & Mobilization Director
Pacific Northwest Child Life Association - Spring 2015 Daycamp
April 17, 2015
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Agenda
• What does it mean to be an advocate?
• Who should be engaged in legislative advocacy?
• How and where can pediatric patients, families and
clinicians get involved?
• Got questions?
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What is an Advocate?
According to the Merriam-Webster Dictionary:
advocate (n.)
1. One who pleads another’s cause
2. One who argues or pleads for a cause or proposal
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Why Is Being an Advocate Important?
• Advances change that can benefit your patients and
your profession
• Keeps the interests of your patients, their families and
clinicians on the radar screen of key decision-makers
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Why Should You Be a Pediatric Patient Advocate?
• As a Child Life Specialist, you know the needs of patients, their families and clinicians to ensure best possible outcomes
• You bring credibility to those needs and are most often perceived as working on behalf of others
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Who Else Should Be a Pediatric Patient
Advocate?
• Other health care professionals who recognize the
needs of patients and their families
• Your patients and their families
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Road Blocks to Advocacy
• Lack of time
• Lack of knowledge with the issue(s)
• Lack of comfort engaging others about policy
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How Do You Get Started?
• Is there an interest of yours which hasn’t been
addressed well?
• Learn more about that interest and who else shares
your concern.
• Contact others who share your interest or ask them
to join you.
• Join other professional groups to share information
and seek assistance.
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Interest
• Decide on 1-2 issues that particularly
interest (or bother) you
• Become an expert by learning more
about the issue(s)
• Identify all “players” involved in the issue – those
who support and those who oppose
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Speak Out on Your Issue
• Public hearings, town halls and advisory boards
• Letters to the editor
• Online activities
• Messages to and meetings with elected officials
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Speak Now for Kids
Join us and take 3 steps:
• Learn Now
• Speak Now
• Act Now
Let’s check it out!
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Extending CHIP Funding
• Children’s Health Insurance Program (CHIP) is a federal-state partnership
that offers health coverage to kids in working families who earn too much
for Medicaid eligibility, but still can’t afford private coverage
• Federal funding for CHIP was scheduled to expire in September 2015,
impacting 10+ million kids nationwide
• Discontinued federal investment in CHIP would lead to the disenrollment of
millions of kids from health coverage by the end of 2015
• Why?
o Most state legislatures finish their sessions by late-May and are required to
enact the next fiscal year’s budget before adjournment
o States can’t afford to pay 100% of the cost to cover CHIP kids, so they needed
Congress to take action well before September
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Speak Now for Kids’ Role in Extending CHIP
• Mobilized key influencers of members of Congress, such as governors,
state legislators, hospital CEOs, parents, clinicians and others supporting CHIP
• Activated our Speak Now for Kids supporters to send messages to their
respective members of Congress
• Engaged millions of people online to increase visibility of the issue and amplify
messaging to lawmakers 14
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Speak Now for Kids Ambassador –
Jen Arnold, MD
• Neonatologist and medical educator
at Texas Children’s Hospital
• Mother of two children with medical
complexity
• Endured her own complex medical
conditions as a child
• Star of hit TLC series, “The Little Couple”
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Why do Dr. Arnold, her fellow clinicians and
patient families believe in Speak Now for Kids?
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Speak Now for Kids Family Advocacy Day
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June 15-16
Washington, DC
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Impact of Family Advocacy Day
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Challenges for Children with Complex Medical Conditions
• Roughly 3 million children – 1 in 25 kids – have complex medical conditions; of that
population, 2 million rely on Medicaid to access care
• Children with medical complexity have multi-year, high-acuity conditions often requiring
the services of multiple specialists and requiring time intensive coordination of care
• Complex medical conditions can occur as a result of many of causes, including
prematurity, cancer, heart defects and severe injury
• Their specialized care often requires providers in more than one state
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Challenges for Children with Complex Medical Conditions
• Care for children with medical complexity is
unique, complicated and expensive
• Children with complex medical
conditions are roughly 6% of kids
in Medicaid, but account for
up to 40% of the program’s costs
• Overall population of children with
medical complexity is growing due to
important advances in medical care,
such as care for premature infants
• Coordinating care for kids with medical complexity is incredibly time intensive,
difficult and, in the current system, it usually falls to a parent or guardian
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Advancing Care for Exceptional (ACE) Kids Act
• Give children and their families a centralized point of
contact for care coordination, relieving families of
the burden of solely coordinating their child’s
medical care
• Data shows that care coordination decreases
hospitalization and improves outcomes
• ACE Kids Act would also streamline care across
state lines
• As a whole, the ACE Kids Act assures that children
with medical complexity in Medicaid will see the right
health care providers at the appropriate time, regardless
of where a child lives or a provider works
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ACE Kids Act is Designed to…
• Accelerate formation of networks for children with medical complexity
• Prioritize choice – voluntary for states, children, physicians and hospitals
• Accelerate the spread of care models designed to save money & improve care
• Enhance seamless access to out-of-state care
• Advance national quality and cost improvement work
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ACE Kids Act Introduced in Congress
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AK
AL
IN
KY MO
MT ND
NH
NM
OR
PA
WV
WY
MS
SD
AR
NE
CO
ME
TN
MI
OH
TX
OK
DC
VA
SC
MA
HI
UT
IA
MD
RI
ID
GA
DE
NC
IL
KS
WA
MN
WI
VT
NJ
LA
FL
CT
NY
CA
AZ
NV
ACE Kids Act: Champions
Joe Barton
(R-TX)
Chuck Grassley
(R-IA) Rob Portman
(R-OH)
Michael Bennet
(D-CO) Gene Green
(D-TX)
Bill Nelson
(D-FL) Kathy Castor
(D-FL)
Sherrod Brown
(D-OH)
Jaime Herrera
Beutler (R-WA)
Anna Eshoo
(D-CA)
Dave Reichert
(R-WA)
Roy Blunt
(R-MO)
Mark Kirk
(R-IL)
Patty Murray
(D-WA)
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Rep. Jaime Herrera Beutler (R-WA)
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Pediatric Advocacy: Start with Small Bites
• Comprehensive change often requires perfect alignment of
multiple variables – including luck
• A series of small success can make the experience manageable
and less daunting
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Take Home Messages
• Identify your interests from a clinical
perspective
• Find out who else shares your interest(s)
• Contact others, such as patient families
and fellow clinicians, who share your
interest(s) and advocate together
• Join other professional groups to share
information and seek assistance
• Speak out and tell your story
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Advocate for Others – Not Only for Yourself
• Focus on benefits to patients and families
• Describe your experience as a Child Life Specialist
• Personalize your story with real-life examples
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Questions?